re: 1-mth-old son referred to neurosurgeon for craniosynostosis (helmet pic p. 14)

Prayers sent.

We went through the whole process only to be told by the neurosurgeon that we didn't need to be there. He came in with a team of students expecting to show them something. Looked at the x ray, then checked out my daughters head and told us to leave.

Best of luck and will send up a prayer for your child.

quote:

---

Now, suddenly at his one-month appointment, the pediatrician is concerned that he may have Craniosynostosis, which is a birth defect in which one or more of the joints between the bones of a baby's skull close prematurely before his brain is fully formed, and his brain may not be able to grow properly. The solution is apparently surgery, where they literally cut into an infant's skull.

Obviously, wife and I are pretty fricked up by the news. Just wondering if anyone here has had a kid go through something similar, or knows someone who did, and what to expect.

---

Damn, sorry to hear bro. I have nothing similar to that. But my kid did always favor sleeping in one exact spot which caused his head to flatten. At around 6 months, we had to see the neurosurgeon and eventually have him wear a helmet for 3 months. But like I said, comparatively, that's way different than what your boy may be going through.

Hopefully it all works out.

And this is why you(all of us) have to constantly stay on top of things and almost bug the shite out of people to get things done!

I would be furious.

I hope everything works out. Prayers sent.

Allen Joseph did my disc surgery in 2010. Pain free since and no issues.

We actually have the CD of the images and I could've easily zipped the files and emailed them to anyone, but they want to get it from the hospital, and I understand. I just don't understand why it hasn't happened yet.

Odds are I'll be switching doctors anyway. At the initial appointment, Dr. Joseph stated he was not trained/equipped to perform the endoscopic type of surgery for craniosynostosis, which is far less invasive and doesn't require a blood transfusion. He said he would refer us to a surgeon who uses this method, but stated that he does not think endoscopic surgery is used for this type of synostosis. I've done enough research at this point to know that lambdoid synostosis can be corrected with endoscopic surgery (I even made the mistake of watching the procedure carried out in a video), so unless there is a compelling reason why this type of surgery isn't possible in my son's specific situation, we'll find a doctor who can do it (and I'll probably be selling a lot of my stuff to afford it ).

But here I am, talking about surgery when I don't even know 100% that surgery is necessary, because nobody has looked at his scans.

Prayers with you guys. Keep us updated.

Eta:just read update. Keep squeaking!

Just got a call back from the Dr. office. They have the images now. But guess what, they want to wait until the fricking appointment on the 17th to discuss it. Currently waiting for the lady to call back now, after telling her I want some information over the phone, just some sort of indication as to what we're going to be facing. She's going to ask the doctor if he'll tell us something. I expect nothing to come of that.

Gotta get that insurance check.

Just getting more livid with every passing minute. I feel like this shite is going to be pushed back way too late in his life.